CF Pregnancy According to My Clinic

If you missed my clinic update click here. I didn't have time to go into too much detail so I will discuss the information my doctor  and nutritionist gave me about CF and pregnancy.

The Doctor:

So I talked to my doctor a little about pregnancy. In the past he has not been overjoyed at the idea, but he has been supportive. This appointment he seemed much more optimistic about it. I think maybe because he realizes I am going to do it anyway :) So I did ask him if there was a concern on his end that my lung function is in the 50s, although high 50s-yay. He said that because I am extremely compliant he has very little concern. He said of course all CF pregnancies comes with some risk, but he felt my lungs would do fine. He said the only 2 concerns he has is as follows.

1. Weight. Although my weight is fine (BMI=21) his only concern is if I have trouble gaining during pregnancy. He said nutritional status is such a huge component of a healthy pregnancy and some cysters have trouble gaining weight. I feel like I will be fine because I usually eat very healthy for the average person, but not "healthy" for a CFer. Growing up without enzymes made me lean towards low fat/healthy foods. Even with enzymes I now have a mental block against high fat, creamy, buttery, or fried foods. I know I could do better in the calorie department if I needed to.
2. Routine. He also said my success if how well I will adapt to the new routine of being a mom and doing treatments. He said if I skip treatments to take care of my baby or the household chores then my health will suffer. If I can find a routine that includes taking care of ALL my health needs and the baby I should be fine. I have no doubt that I can do this. If I am lucky enough to have a baby I want to be healthy enough to raise him/her.

The last thing we talked about was getting pregnant!! My doctor said something about us trying and I mentioned that it seems really hard for Cysters to get pregnant. He was actually quiet optimistic about this which shocked me. He said there are 2 major problems when it comes to CF and getting pregnant.

1. Nutrition status (again with the nutrition!) If weight and vitamins and over all nutritional health is down the body will not want to support life. He said sometimes gaining just a little weight can increase the odds of pregnancy
2. The BIG one!! Cervical mucus in CFers is thicker than non-CFers. Damn our mucus. He did say that although it was thicker it is only considered subfertile and not infertile mucus. Meaning if there are some strong swimmers you may still get pregnant. Of course the thickness may vary depending on the woman. He said that he wouldn't be too concerned about not getting pregnant at this point. He said that a lot of woman in the clinic have done it naturally. This actually was the best thing I heard all day. Fingers crossed.

Nutritionist:

So my nutritionist was pleased because my weight went up. It was only two pounds and I personally think weight can fluctuate depending on a woman's cycle. I am currently PMS and retaining water so I was probably heavier than I will be in a week from now, but 2 lbs would be a lot of water so I probably did gain a little. Since she was happy with my weight she came in to check on my vitamins. She asked if I was taking a prenatal vitamin. I said that I have been taking one for a year now. **FYI- I got my 1st bachelors(before teaching) in nutrition so I am pretty knowledgeable when it comes to vitamin needs even in pregnancy** She wanted to ensure I was getting enough folic acid because it is crucial in spin development (prevents spina bifida, encephalocele and other defects) within the first 3 weeks which is before most people know they are pregnant. 

She then asked me what vitamins I am taking. I take 2 chewable ADEK, beta carotene (Vitamin A) and Vitamin D. She then said that if I get pregnant I may need to either cut down on the ADEK or beta carotene. I know that if in pregnancy you get too much Vitamin A your baby is at higher risk for birth defects such as cleft lip or even heart defects. Random fact: This is why a lot of prescription topical acne creams (Retin A or accutane to name a few) can't be used during pregnancy because they contain too much Vit A. Okay, I will stop with the nerdy nutrition stuff...I just fined it all fascinating. Oh last thing...it is really hard to overdose on vitamins from food source so the concern comes more from supplements so if you love carrots, don't worry.

This is really long, but I figured any other CF women out there trying or thinking of someday trying may benefit from some of the things I heard in clinic today. Now it is the waiting game...

Green Light

So I went to the high risk OBGYN and she gave me the green light! She said that she has very few concerns. Here is an overview of the appointment.

My weight looks good. She said I was one of the few patients she tell they can gain the whole 20lbs during pregnancy. She said most people start out overweight and need to gain much less. She said exercise is fine as long as I can gain enough weight otherwise I may need to cut back on the gym.

She said my FVC is fine (in the 90s), but my FEV1 is low. She said that even though my FEV1 is 50% she really wasn't worried especially with a high FVC. I asked her if she ever had to end a pregnancy due to FEV issues or other CF related complications and she said, "Never." She was so optimistic and really reassured me that everything would be okay.

I would be able to stay on all my meds and wouldn't have to change anything. The only problem is no cipro, bactrim, or levequin which are my oral tune up go to drugs. That is a little scary, but I will have to talk to the CF docs to see what backup I could use.

The only thing she was concerned about was gestational diabetes which CFers have an increased risk for. She did say she would be watching me like a hawk for CFRD and would do their best to keep it under control if it became an issue.

The only other concern I have is how long it will take to get preggo. When I asked if CFers seem to have a harder time getting pregnant she just said she wasn't on the infertility side and had no idea. Cross your fingers because I am not getting any younger!

Getting the ball rolling

So I have an appointment with the high risk OBGYN that takes care of all the CFers at clinic that have had children. The appointment is June 17th. I am very excited to get a specialist who has lots of experience with CF pregnancy to discuss the best way to go about pregnancy for a CFer. I will update you after the appointment. For now I am trying to organize the million thoughts/concerns I have into coherent questions. I am so beyond excited and terrified at the same time.

When do you know?

So I am having an ongoing issue of not knowing when to give myself the green light to start trying. I am an over-planner and an over-thinker, this I already know. The problem is with planning to have a baby there is always something that could be better before trying. I keep thinking maybe we need a few more dollars in the nest egg or maybe a few more hundred, or thousand. Maybe I should wait until I am better at keeping my closet organized because a messy closet will be much more stressful after a baby is here. Maybe we should enjoy married life a little longer and travel more because it won't be so easy once baby is here.

Then there is the CF when? I should wait until I gain 5 more pounds (although my doctor told me my weight is fine for having a baby, but 5 more security pounds would be good). Maybe I should wait till I eat a healthier diet. Almost solely local grown, no hydrogenated oils, artificial dyes, and processed foods. I am pretty good at this, but have not perfected it. Sometimes things from cans make dinner time so much faster! What about exercise. Shouldn't I wait till I am at my physical peak. Whenever that is and I haven't figured out how I would measure it, but I am sure I am not there yet. What about my numbers? Shouldn't I wait until I have one more PICC line or until i have a few more rounds on inhaled meds???

Here is the proof that I am ready and yet I have not given myself the green light yet.

1. I take all my supplements (vitamins, pro-biotic, prenatal vitamins) without fail for several months. I have always been good at taking pills.
2. I am 100% compliant with my meds (with the exception of vacations. I am never great at being perfectly compliant on vacation, but I rarely go on vaca so I figure its okay)
3. My Dr said my weight is a-okay for baby making.
4. My PFTs have been stable for almost 6 years which my Dr said is more important than the number itself.
5. I am exercising!
6. I feel healthier than I have in a VERY long time. As in years. I am not sure what my current PFTs are, but I feel amazing.
7. My menstrual cycle is getting shorter and shorter (normally 34 days and has slowly decreased to 29 days) which I take as a sign that I am in better overall health.

My Dr gave me the green light, but I am so afraid of taking the plunge. Not for myself, but for my unborn baby and my husband. I honestly believe that if I have a baby she will be perfectly healthy, but I am afraid of what might happen to me. Again, I am not worried for myself, but I would hate to put my husband through any pain and even more than my husband I would never want my baby to have a very sick mama. I just wish I could have some sort of sign or way of knowing when we should start trying.

Oh and I know that there is a chance that it may be very difficult to get pregnant and that I may need fertility help although I am hopeful this won't be the case. I come from a line of uber fertile women and so I hope this has been passed down to me. Maybe I am naive, but I just don't want to worry about it until I cross that bridge. With that being said very few people get prego their first month so I don't want to wait too long, but I don't want to rush it either. UGH! Can you see my dilemma?!?